Yesterday`s visit to the dietician went fairly well, apart from me getting the hospital wrong, long story, which I won`t bore anyone with, but we made it to the right one in the nick of time. The dietician was pleased with Chris`s weight and gave tips of how to keep the calories up, she approved of adding full cream milk, mayo and extra cheese on meals and that seems to have helped plus the Resource milkshakes the GP prescribed. The only thing that took us aback was her asking Chris if he`d thought more about a gastronomy tube, a feeding tube placed into the stomach through the abdomen wall. The speech therapist had mentioned it, but we thought that would be a long way off yet. The dietician said it was best done while you are fairly fit and well, before you need it as it is a surgical procedure. That was a lot to take in, even for me, to have to think about that so soon. I know Chris isn`t ready to think about that yet, hopefully he`ll have a bit longer before he has to make his mind up. It is his choice whether to have one or not , but it will extend his life as it will enable him to be fed when he is no longer able to swallow, scary stuff, it breaks my heart what Chris and everyone who has MND will eventually have to go through. It is a big step to take and yet another thing to confirm that this is all so very real.
Today Chris is off to see the speech therapist this morning , hope we don`t get stuck in traffic as they are resurfacing the only road into town. The occupational therapist is coming this afternoon to do an assessment, I think the physio is coming too. Hopefully they will bring a shower seat. All these well meaning people, some invading our home on a regular basis. I wish we didn`t need them, I wish this would just go away and I wish my darling husband could be cured. It`s why I share this, spreading awareness is the one positive thing we can do and we shall do, our way. What we all want IS A CURE !!!
